cheating is a survival mechanism, ok? it's fine.
cheating is a survival mechanism, ok? it's fine.
Autism Cheatsheet!
Ok, I’ll bite ...
What is Autism?
Author’s note: I am sooooooo excited to tell you about my current hyperfixation!!!!!
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Autism is a neurodevelopmental condition. By definition, “neurodevelopmental” involves the development of a person's nervous system - the communicator between our body and our brain. This system controls motor functions, senses, thought processes, awareness, learning, and memory and regulates internal physical states such as body temperature.
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Let's talk about "disabled" as a label. "Disabled" and "disability" are not negative or shameful terms. Instead, they express a disadvantage and a need for changes to be made to accommodate that person. It is okay to allow a person to refer to their autism as a disability because it is a disadvantage. The world isn't structured in a way that allows us to live a life suited to the autistic brain without some accommodations.
Think of it this way: Imagine if, one day, 99 percent of the population suddenly developed the ability to fly. Then, because most people can fly, a large portion of society's structures and daily tasks start requiring the ability to fly. Those who never developed that ability are now at a disadvantage. They are now disabled. That doesn't make them any less valuable or able than before things changed, and saying they are disabled isn't an insult. It just means they require specific accommodations to do what everyone else does. In many cases, making accommodations for those who are disabled actually makes life easier for everyone.
Disability means that you aren't able to do things the same way as most people, and as a result, the structure of society isn't entirely suited to your level of ability. So I have a disability not because I'm different but because of the structure of the society that I live in.
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Meltdowns and shutdowns - see Sensory Issues below
Masking - see Social Skills below
Dealing with change and unmet expectations - see Cognitive Functioning below
Executive dysfunction - see Cognitive Functioning below
Sensory processing disorder - see Sensory Issues below
Communication difficulties - see Social Skills below
Poor proprioception - see Sensory Issues below
Poor interoception - see Sensory Issues below
Difficulties with socializing - see Social Skills below
Trouble processing conversations - see Social Skills & Cognitive Functioning below
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Autistic burnout is extreme mental, physical, or emotional exhaustion, accompanied by a reduced capacity for stress. Autistics already have a lower capacity for stress than most people, making it significantly more challenging for them to function when burnout occurs. Autistic burnout can be caused by trying to understand, fit in, and manage the neurotypical structure. Having one's needs understood and accommodated, receiving support, and having the freedom to be an authentic version of oneself, without consequences, can reduce the chances of autistic burnout. Autistic burnout can look like severe mental illness and include suicidal thoughts and behaviours. If mental-health treatment does not take autism into account, it can worsen the state of burnout. What might be helpful for a neurotypical can be harmful for an autistic person. Teaching autistics to use eye contact, encouraging masking, forcing verbal communication, punishing them for meltdowns or shutdowns, teaching them to stop stimming, or making them try to keep up with everyone else can be extremely harmful. Neurotypicals may celebrate when an autistic person appears more "normal," but at what cost? Rather than trying to get autistics to change their outward version of themselves, we should push society to be more understanding and accepting of their differences.
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Note that everyone's experiences are different, but there are positives in every unique expression. Autism is a large part of a person's identity, and viewing it entirely negatively will hurt you in the long run.
Honest
Logical
Analytical
Full of facts about their special interests
Unique
Inventive
Organized (In their own unique way, perhaps!)
Tolerant
Creative
Detail-oriented
Punctual
Strong sense of justice and fairness
Loyal
Determined
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I use this hugging emoji loosely - your autistic friend might not want a hug. Here are some things to be aware of if you are trying to support the mental and emotional health of someone with ASD: Sensory overload can cause distress. When autistics experience sensory overload, any sensitivities may also be intensified. "I don't know" can be a true statement. Asking the question again or telling the person they must know isn't likely to generate a different answer. Telling them that you can't help them if they don't know the answers can also worsen the situation. Phone calls can be really difficult for autistics. A phone call creates an anxiety-provoking social situation, and it can also be difficult for the autistic person to understand what's being said. Pauses to figure things out and come up with a response are often misinterpreted. If the autistic doesn't answer immediately, the other person can think they're not there anymore or that they're being difficult. This can result in miscommunication. Many autistics express different emotions to what they are experiencing internally. It is important to note that outward expression is not always an accurate indicator. Autistics may take longer to respond. It is crucial to ask straightforward questions. When autistics are in distress, there is even less chance that they will be able to interpret and understand questions that aren't to the point. Withdrawal can be a healthy coping mechanism, as autistics need time to regulate and recover. However, withdrawal can also be a warning sign that something is wrong.
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Identity-first language is saying "autistic person" or "I am autistic."
Person-first/language is saying "person with autism."
Most people in the autistic community prefer identity-first language.
On the other hand, parents, professionals, and other neurotypicals prefer and are taught to use person-first language, even though it is not about them.
Many autistics view person-first language (PFL) as harmful or ableist. PFL implies that the person's autism is viewed negatively, almost as if it were trying to separate the person from their autism and prevent them from identifying with it. For instance, you wouldn't say "person with extroversion," "person with competitiveness," "person with selfishness," or "person with laziness."
We allow both positive and negative labels about people's personalities and identities.
Autism is a huge part of who I am: it affects not only my personality but also my movements, thought patterns, and way of being. Autism is how my brain is wired; it is a part of me. I don't just have it; I am not separate from it.
We use Person-First Language (PFL) for illnesses that are wrong with a person's well-being. For example: "person with cancer," "person with dementia," and "person with the flu." Autism is not an illness; it's not something wrong with me. It's a different neurotype.
By saying that a person should only use PFL, you're also implying that if you can't identify with the neurotypical neurotype, then you shouldn't identify with a neurotype at all. Most people don't say they are neurotypical - many don't even know the word. But I'm sure if they did, they wouldn't be told to say "person with a neurotypical neurotype." I am autistic, and I'm proud of it.
I’ll do my best below to make some of these traits make more sense, but I had a hard time categorizing them -
they might fit into multiple categories for different people. We are very nuanced, sophisticated creatures.
Please note that your experience might feel more cognitive than sensory or vice versa.
SENSORY CHALLENGES
It’s rough out here, but headphones help (sometimes).
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Clothing can be difficult for autistics to deal with daily. Tags, seams, stitching, embroidery, rough textures, tight or loose fit, etc., can all become problematic for someone who struggles with sensory input.
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Autistics can be known for having picky eating habits (due to the volume and intensity of textures and flavours), wanting to eat the same food repeatedly, and eating plain foods. You might manage by separating food rather than mixing or eating a minimal range of food. Or both.
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There are many reasons why autistics might forget or refuse to do basic things, like eating or going to the washroom. You might be hyper-focused on something else, unaware that your body needs something, or in the middle of an activity you feel needs to be completed before interruption. Reminders and routines can be helpful.
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Many autistics are hyperaware of our surroundings because our brains take in more sensory input than neurotypical brains - we are not overreacting. Any person would find themselves overwhelmed by a brain like this.
Autistics may appear emotionally sensitive or overreactive due to several things. We are managing sensory input, masking, and struggling with daily tasks or keeping up with peers, all at once. We have less "space" or capacity to handle stress before it becomes overwhelming.
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Some autistics have a hard time with imagination. This might make pretend play or reading fiction challenging because we cannot picture the characters or events we are trying to conjure up without context or any guarantee of accuracy.
Many autistics overanalyze small details, which means it can take a long time to develop an accurate imaginative idea. Pieces that don't make sense can slow this process down a lot.
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Sensory overload is a state of feeling overwhelmed due to excessive sensory input. People may not always be aware that their overwhelm is due to sensory overload - especially if it has built up gradually over time, or if they are unaware that they are autistic. Everything can feel too intense; lights may be too bright, sounds may become painful, and smells can be overpowering. When there is no escape, it becomes challenging to function.
Don’t invalidate yourself. If an itchy clothes tag or a fold is bothering you, it is not nothing. And it can catch up to you at an inopportune moment. Listen to Katherine May’s story about how she had a mental breakdown in the middle of grocery store because of an itchy cloth tag.
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Having a sensory diet means using tools to prepare for, manage, or recover from activities that are either over- or understimulating. Sensory tools, stimulation, or lack of stimulation can help regulate and avoid feeling overwhelmed. For example, using headphones or noise-cancelling earplugs to manage excessive sound.
For a hypersensitive person, it might mean allowing time for something soothing before or after an overstimulating activity: music, quiet, foods, smells, small spaces, being in the dark, climbing, stimming, proprioceptive input, vestibular input, or anything else that is helpful.
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An autistic meltdown is an uncontrollable outward explosion of emotion as a reaction to built-up stress. It may appear to come out of nowhere, but the present triggers are often just the tipping point that causes the bucket to overflow after a buildup of other stressors. Meltdowns are, unfortunately, the only way to release that built-up stress.
They are not a choice and can be very distressing for the individual going through them. Meltdowns can involve yelling, kicking, screaming, hitting, and other violent behaviours, so it is important to ensure that no one is getting hurt. But otherwise, once a meltdown has started, it's best if you just let it run its course.
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Proprioception is the awareness of our body in relation to space and objects, how it is positioned, and how much force is used. Issues with proprioception can lead to clumsiness, bumping into things, being too rough, using too much force, difficulty with motor skills, etc.
Autistics often find proprioceptive input calming and comforting. Proprioceptive input is anything that provides intense sensation or input to the muscles and joints. This could include using a weighted blanket, having a tight hug, walking on tiptoes, chewing, or interacting with things that provide pressure (like squeezing into small spaces).
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Shutdowns are another way that autistics may cope with an overload of stress. Like meltdowns, shutdowns aren't always controllable. They may involve hiding, curling up, or not talking, laying or sitting on the floor. Often they may only be able to engage in whatever task or activity they were doing once they come out of shutdown.
In most cases, being allowed time and space is the best way to recover. However, sometimes other people may be able to draw us out by engaging in our interests or offering tools to cope with the situation.
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Being hypersensitive means experiencing sensory input more intensely than others. You might see, hear, smell, or taste things that others don't, and textures can feel more extreme. Sometimes, sensory input can be overwhelming or physically painful, causing meltdowns or shutdowns.
Sensory issues involve sight, sound, smell, taste, and touch, but also proprioceptive vestibular input. Autistics will seek out sensory input to function and regulate. Both groups can find different sensory tools or inputs to be soothing.
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The vestibular system uses receptors in the inner ear to send information to the brain about head position, balance, movement in space, and changes to the speed of movement. Vestibular input engages those receptors - swinging, spinning, climbing, jumping, being upside down, balancing, etc.
Issues with this system can lead to avoiding intense vestibular activities or seeking out more powerful forms of vestibular input. Intense vestibular input can also be used as a form of self-regulation. How it presents depends on whether the individual is under- or overprocessing information from the inner ear. It is not uncommon for autistics to engage in spinning or rocking or be clumsy.
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Interception is the awareness of what is happening inside our body. For example, it tells us when we are hungry, full, nauseated, too hot, too cold, need to pee or sleep, etc. Difficulty with interception can mean that autistics may not feel these sensations, be unable to identify them, or interpret them correctly.
This can lead to forgetting to do necessary self-care tasks (like eating or going to the toilet, or not being aware of the steps necessary to keep their body healthy). Difficulties with interception can also affect our perception of pain, as well as our breathing and heart rate.
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Listening can look very different for autistic people. We might not turn our heads or make eye contact, but we could still be listening. We might be fidgeting, moving, looking around, or doing another task, but we could still be listening.
When we respond, we might have made different connections in our brains that might not be relatable to you, so you might think we weren’t listening. But requiring an autistic person to perform the cues that make you feel like we are listening, can actually prevent us from hearing you.
STIMMING
Y'all don't even know how many Altoids, Ricolas and jumping jacks I require to write these lil’ posts.
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Echolalia is repeating words, sentences, or sounds spoken by another person and sometimes even copying behaviours.
It usually happens in the moment - immediately after another person has spoken - but some may also experience it delayed, repeating words or sentences long after they've heard them, often out of context. It is not a conscious decision.
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Autistics sometimes like hiding or sitting in small or dark places for comfort, regulation, or stimming. They might also enjoy climbing, being up high, spinning or being upside down. This could be due to feeling overwhelmed, or just because they enjoy it.
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One commonly relatable experience is the tendency to stare at your reflection and an occasional lack of recognition of your reflection. Not recognizing your own reflection could be connected to dissociation. Still, many conversations around this suggest that dissociation isn't involved in others' experiences.
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Autistics may not interact with toys in the way that is expected. Traditional play with toys requires some level of imagination, which many autistics have difficulty with. I used to "play" with my toys by setting them up, putting them in some order, or simply placing them in a line for display. I would spend hours doing this and then put them away.
As an adult, playing with toys may still be tricky. Trying to role-play conversations and tell stories through inanimate objects, even when playing with kids, may be difficult or even entirely outside of our ability or comfort zone.
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This one is just fun and can be soothing in the moment, but can lead to feeling horrible later on - it’s hard to tell when we are full. Smaller snacks (like popcorn or sunflower seeds) help if you are always feeling munchy.
COGNITIVE CHALLENGES
It's all the brain functions you need to be a productive 9-5 cog in the machine: memory, self-regulation, a sense of time etc., but also fun stuff about processing feelings!
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Alexithymia is difficulty with identifying or describing emotions. It may feel like there's not enough vocabulary to accurately describe how you feel or that you don't know what the feeling is. You may therefore have difficulty expressing emotions in a socially appropriate way.
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Cognitive overload describes the overwhelming feeling caused by multiple stressors, which can lead to meltdowns or shutdowns. Autistics often have a higher stress baseline than neurotypicals due to masking, difficulty with change and communication, social differences, and hypersensitivity. The more sensory input, the higher the stress level.
Uncertainty, lack of control, multiple expectations, loneliness, executive dysfunction, new things in the routine, and vague plans can all add to this stress. Autistics often don't have enough room to process all of these stressors. It can take longer to process, so stressors can come in faster than they can be dealt with.
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Many autistics can relate: some tasks are easier to complete than others. Neurotypicals might take longer to do something that an autistic can do quickly, and vice versa. What you’re able to complete really just depends on what you’re more interested in and challenged by.
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“Zoning out" is similar to daydreaming or losing focus. You may need to be aware of your surroundings or notice someone trying to get your attention. However, it is usually relatively easy to snap out of.
Dissociating is more severe. It is often described as a disconnection between your body and your mind, where you have no control - like being in the passenger seat, except the car is your body. It can also impact your memory, make you feel disorientated, and affect your perception of time. Both might be connected with overstimulation, and may result in a shutdown.
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Executive dysfunction is wanting to carry out a task but just not being able to. It impacts our ability to plan, start and stay on task, stay organized, motivated, regulated, and adjust actions according to the situation.
What might seem like just one task for one person might become several difficult tasks for someone who struggles with executive functioning. Distractions and too much information coming in too fast can make the original task feel overwhelming. You may start each new task as it comes to mind while forgetting about what you were originally doing. This could become dangerous if the initial task was cooking or ironing.
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Some autistics strongly desire equality and fairness, which may carry over into seemingly unimportant situations. Autistics may be so driven by a desire for equality that it overrides everything else, even if it may seem petty and a waste of time. However, this can be a positive trait, as some autistics may have a hard time advocating for themselves but can be strong advocates for others when they see injustice.
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Autistics may come across as indecisive, often responding with “I don’t know” no matter how many times they are asked. While a neurotypical person may enjoy having a range of choices or the freedom to come up with their own possibilities, an autistic person may become overwhelmed by multiple options. For example, something as simple as "What do you want to eat today?" can be too big a question.
It can be challenging to think about what to choose from, especially when verbally presented with too many options. Many autistics need to know their options, but only a few at a time. Having them written down can be helpful, or having someone help to narrow the list down can make it easier to manage.
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Many neurodivergents have an interest-based nervous system, while neurotypicals tend to have an importance-based nervous system. This means that neurodivergents are motivated to complete a task when they find it interesting. This could be due to curiosity, being challenged, a fascinating topic, or something that falls within their core values. When the interest wears off, so does the motivation. Neurotypicals, however, often gain motivation from the importance of a task: things that are important to them, their boss, their goals, personal gain, or something that falls within their core values. This can lead to a lack of understanding between people who are motivated in different ways.
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Placing expectations on yourself is one thing, but having multiple expectations from others can be overwhelming for anyone, autistic or not. For an autistic person, this is even more stressful for other reasons. If these expectations are expressed verbally, we may only be able to remember some of them. If the expectations are unspoken or not expressed explicitly, we may misinterpret what is expected of us.
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Neurotypicals often ask for things in as few words as possible yet still, understand each other. It's like they have a shared, unspoken language they can all understand, yet they forget it exists. As a result, when they ask an autistic person to do something, and the instructions are taken literally, it may be seen as the autistic person's fault for not understanding the underlying implied expectations. Autistics need instructions to be given as literally as possible, without unspoken extras. We are not automatically linked to the world of things that neurotypicals think are implied or common sense. It may be common sense to a neurotypical, but it may not be to an autistic.
Similarly, what is common knowledge for an autistic may not be evident to a neurotypical. This applies to more than just instructions - explanations, conflict, and social interactions. In situations where things may be implied, autistics usually need people to say precisely what they mean. Most autistics mean what they say in a literal sense. There is usually only an underlying message if they are masking and have learned to say things that mean something else.
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Many autistics prefer and seek out rules in settings that most others don't. This is likely because we don't intuitively pick up on social cues and expectations, so without rules, we can find ourselves in confusing and uncomfortable situations. Rules help us make sense of our environment and stay out of trouble.
We might want rules for play, routine tasks, social situations, etc. It's tough for us to keep up if rules constantly change, and everyone else seems to know what those changes are without discussing them. The rules need to be logical, or they can be hard to follow.
Many of us are happy to stick to any boundaries you set, but we need them to be clearly communicated. Boundaries help us to know when we are overstepping or being annoying. For example, let me know if you don't want me to text you on a particular day. If you're on a call or meeting and need me to be quiet, say, "I'm on the phone, so I need you to be quiet." I can see that you're on the phone, but I don't know what that means for me unless you tell me. Instead of hinting that you need to leave or that you're busy, say that you need to go. Respect me when I say I need to leave too. And don't say, "It'll only take a minute" or "just one more second" because those phrases are rarely used literally. Just say what you mean.
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Some individuals may experience a degree of lack of object constancy. This is your ability to remember things that are not presently visible. It is similar to how an infant is unaware that something they cannot see still exists (object permanence). This is more common with ADHD, but there is a lot of overlap. This can be summarized as "out of sight, out of mind."
For example, if you cannot see the leftovers in the back of the fridge, you'll forget until it is too late to eat them, and then they need to be thrown away. To manage this, a neurodivergent person might keep their belongings so that all or most items are regularly visible. This may seem messy and disorganized to others, but it's best left alone if it is a safety hazard. If someone else moves or cleans up our items, we can find it really overwhelming, as we may have a hard time remembering what we are even looking for since we can't see it.
This is also one reason we may not take the initiative regarding tasks involving other people's belongings. For example, I don't want you to move my things, so I will only move yours if you ask me to and tell me where everything goes.
This lack of object constancy, unfortunately, sometimes carries over to things like responding to text messages or even forgetting about people.
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Some autistics may take longer to process and understand conversation than a neurotypical does. This could be for various reasons, but these are some of the ones I've noticed and heard from others. First, some autistics have a slower processing speed (including me). It's how their brain works. Cognitive load (e.g., having to be more formal, having to remember multiple instructions, or having to remember a date and time) can make processing speed slower, and it may take time to fully process what is being said. For some, occasionally, words sound like a foreign language. Literally. You hear words but they make no sense. This can happen to varying degrees. Sometimes, you hear the words but without meanings attached to them. Sometimes the words don't sound like words at all.
Some autistics may take longer to process conversation because they are trying to figure out if they are interpreting it correctly. Sometimes what they hear from an autistic perspective doesn't make sense in the context of the situation, and they may be trying to translate it into what it means from a neurotypical perspective. Some autistics have reduced thought-space to figure out conversation. For some, there is so much consuming their mental capacity that it just takes a bit longer. This is especially true if the person is hypersensitive and is in a high-sensory environment. It can be frustrating in group social settings, because by the time they think of a response or something to add, the conversation has already moved on. People tend to assume they're shy or have nothing to add, but they just need a bit more time to think about it and an opportunity to say what they want. Being given an opportunity is important because many autistics struggle with finding a space to speak without interrupting anyone.
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Rigid thinking is when someone operates under the idea that there is only one correct solution, order, or way to do everything - their way. This could be as small as being unable to wear shoes at home. Likewise, the laundry has to be done in a certain way or at a specific time.
Rigid thinkers are often seen as stubborn; they aren’t easily convinced and don’t consider other options or quickly change their minds. Instead, they must reach their own conclusion. This is also why change and unmet expectations can cause anxiety.
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Story memory refers to your ability to recall a story you have read or heard. People with poor story memory may not be able to answer questions related to the story. Poor story memory can be misinterpreted as not listening.
It is common for autistics to have exceptional memory in some areas and contexts. However, recalling verbal instructions, lists, or lessons may be difficult. It's not that we aren't listening; it's just that some of us struggle to store information given in a purely verbal format. Alternatively, some autistics can recall everything that is said but not necessarily process everything. Having information written down or displayed visually can be beneficial in either situation.
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Having a routine or schedule is essential t for many autistics. It provides stability and familiarity, helping us to remember tasks such as eating and using the toilet. It also allows us to plan for times to regulate and do what we want. A routine is consistent and reliable when the world around us is not.
Overall, having a routine and schedule reduces stress and increases our capacity to handle other stressors. Some really good visual scheduling apps can be helpful, such as Tiimo.
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Being asked too many questions can be overwhelming. Sometimes, we need more time to process each question before another one is asked. The questions are still slowly being processed in the background and adding more can put the autistic person into a state of overload, causing them to shut down completely.
It can be helpful to check if the person needs more time or is ready to move on. This is an additional question, so keep it a yes or no question. The more you talk, the more there is to process.
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Travelling can be a nightmare for some autistic people (including Maria). While neurotypicals might find travelling a pleasant break or even relaxing, it can be quite the opposite for autistic people. Travelling often removes routine and familiar environments and often comes with unexpected changes. Planning and preparing for everything when travelling can be difficult, as it can be hard to know what to expect, and it often involves some level of spontaneity. All of these factors can cause a lot of stress.
SOCIAL CHALLENGES
*Some of these things might not feel like a challenge when socializing with other autistics. Therefore, these should not be considered difficulties with socialization but differences in how individuals interact.
Understanding, acceptance, and clear communication can help make social interactions easier for autistic people.
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Autistic people might have difficulty making and maintaining friendships for a variety of reasons, including:
An inability to pick up on social rules and cues
Shyness or lack of social confidence
Difficulty understanding what friendship means
Lack of similar/shared interests
Too many miscommunications or misunderstandings
Coming across as intense or obsessive
Different communication styles
Difficulty dealing with or resolving conflicts
Being unsure if the friendship is mutual
Inconsistency in interactions
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Masking hides our autistic traits to live in a world that functions around neurotypicals. I'm constantly aware of every aspect of my body, how I'm positioned, the tone of my voice, the amount of eye contact I'm making, what gestures I'm using, what emotions I need to show on my face and body, how much I'm talking, etc.
Sometimes autistics also try to figure out what social cues are being put out, so we can act accordingly. But, unfortunately, we can become so focused on all these factors and trying to look like we're engaged and listening that we don't have the headspace to listen. Many of us would be more comfortable making no eye contact, using no gestures, and not worrying about our facial expressions or what emotions others think we're expressing.
For me, the most accessible form of masking is mimicking - copying the person I am with: their way of talking, sitting, moving, tone, gestures, etc. We mask to make others comfortable and to avoid miscommunications that can create awkward or difficult situations. But masking is exhausting and takes up a lot of brain space: it's like being a full-time actor who's been put on the spot, performing live and with no script.
Some autistic people will even create "scripts" for different settings. It is standard for people to think about what they might say in different contexts and to mentally rehearse social scenarios, but neurodivergent people do it to an extreme. I can spend hours planning, rehearsing, and refining lines and responses for different situations and conversations, memorizing to be sure that I get things right, especially if I know I'm going to be in a new situation.
Some autistics even plan conversations to prepare for general and specific social situations. But, unfortunately, this consumes a lot of energy, which can mean we are thrown off if we find ourselves in a situation we haven't prepared for.
If people were more understanding of how autistics communicate, this performance wouldn't be a necessary chore of ours. Instead, I want to be myself, in my body language and using my own words, without a pervasive fear of being misunderstood.
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Sometimes, autistics may take longer to respond or may not respond at all. Here are some possible reasons why:
I need more time to process what's been said.
I need more time to think about my answer.
I don't understand.
I've zoned out.
I didn't register the fact that you were speaking to me.
I don't have a response.
I didn't realize that you wanted or expected a response.
I've gone into a shutdown or meltdown.
I am in sensory overload.
I don't want to talk.
I've gone nonverbal or nonspeaking.
I have had enough of the conversation and no longer wish to participate.
I am overwhelmed.
I was given too many options or questions at once.
I am unsure of how to respond.
I've run out of energy or capacity.
I have something to say but can't find a space in the conversation to insert it.
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Receiving gifts can be stressful, not because we don't genuinely appreciate or want them, but because of the expectations that can come with them. It can make us anxious because of the outward reaction that is expected or sought by the giver. When we receive a gift, it often seems like our gratefulness and how much we like it are judged by our outward reaction. This is problematic, as autistics are only sometimes good at matching their outward expression to their inward opinion. As a result, people's feelings can get hurt. The more we try to explain how much we like the item, the less they seem to believe us since our body language and facial expressions don't match our words. It can also be uncomfortable being watched - for any reason, but especially when we know people are looking for something in our reaction, and we aren't entirely sure what that is.
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Many autistics have difficulty picking up on sarcasm. This can come across as being too serious. However, I am being respectful by taking you seriously. How can I know what’s serious and what’s sarcasm when both sound the same to me? It’s not that we don’t find it funny - we may like the joke, but sometimes we need extra help to recognize that you mean it as a joke. When sarcasm is directed toward us, it can be very upsetting because we may not know it’s intended as a joke. Honestly, though, in many contexts, neither party will notice that there was a miscommunication unless it comes up again later.
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It is reasonably well-known that some autistics are either entirely or primarily nonverbal or nonspeaking. However, it is lesser known that even verbal autistics can sometimes be unable to speak out loud.
As someone who is usually verbal and spoken, when I become nonverbal or nonspeaking, it's not a choice - I physically cannot get myself to talk. That doesn't necessarily mean that I don't want to communicate or socialize; it just means that I might need to do it differently.
Note: Different people have different understandings of what the terms "nonverbal" and "nonspeaking" mean. For some, "nonverbal" refers to those unable to communicate using words of any kind, including written words (although they may still communicate via sounds or gestures/ movements). Meanwhile, "nonspeaking" refers to those who cannot share using words of any kind (including written words spoken aloud) but may use words through writing, sign language, digital devices, cards, or other means.
For others, "nonverbal" just means not expressed orally. In that case, people might use "nonverbal" to refer to times when they do not communicate using their voice, but they can communicate by other means - similar to the above definition of "nonspeaking." They consider writing, signing, or using digital devices to be another form of speaking.
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The definition of "small talk" is "polite conversation about unimportant matters." Essentially, it is any conversation that does not express strong opinions or intense interests. This is how neurotypicals start to build relationships or trust with other people. Many autistics do not understand small talk. Frankly, it does not make sense. Why talk about the weather when neither party actually cares about it? It is simply talking for the sake of talking. It does not bring one closer to knowing who the other person is, it does not tell one their interests or passions, and, most of the time, the topics are boring. The other thing that does not make sense with small talk is that, although what is said may be structured as a question, there are usually only a few set responses that are socially expected. Remember that many autistics are unaware of social expectations, so they might genuinely and honestly answer the questions with actual thought. “How are you?” is the main one. Or something like "Isn't it a nice day today?" The expected answer is always “Yes”. Likewise, "Are you looking forward to the weekend?” or “Got any plans for the weekend?" The true answer might not be socially appropriate. Why ask someone a question when you already expect a specific "polite" answer and do not actually care?
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Social cues include body language, tone of voice, facial expression and eye contact.
Social expectations are the unspoken rules about what is socially acceptable and what is not.
Autistics generally needs help picking up on these cues and expectations. These cues and expectations are inconsistent across different contexts, and we are expected to already automatically know the differences somehow. This makes it challenging to figure out what other things mean or what we should do in different situations. Also, many social cues and rules need to be clarified logically from our perspective, making them difficult to follow.
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Simply put, if I’m not expecting something, I’m not prepared for it. This means I can't give a reaction that is socially appropriate (from a neurotypical perspective) or accurate to how I feel. As a result, my unfiltered reaction may offend people or be taken the wrong way, since I haven't had the chance to translate it into something understandable. It may also cause me to become anxious or overwhelmed if I’m not mentally prepared or if it changes something I was relying on.
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Implying something means using unspoken language and assuming that the listener understands. Many autistics may struggle with implications because our brains do not function or think like neurotypicals. Neurotypicals tend to pick up on implications more quickly because their brains work similarly to one another's. On the other hand, Autistics might not pick up on or use implications. This is referred to as a struggle to "read between the lines" or "see the gray area," which is ironic - because it's an implication, and not literal.
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Some autistics may have difficulty understanding or defining relationships or friendships. This is partly because there isn't one set definition for what friendship is, or when you might describe someone as a "friend." In reality, people often use "friend" to describe someone they know, rather than to express a relationship. This can lead to confusion, frustration, and hurt feelings for autistics, who may think they have a strong friendship with someone, only to find out later that's not the case. It can make it hard to trust that any relationship is mutual and result in feelings of loneliness and isolation. When autistics form a friendship or other relationship, they can become “all in” very quickly. Establishing a mutual connection, a sense of closeness, and understanding what that looks like can be challenging. Clear communication and reassurance can be helpful.
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When I refer to "vague plans," I'm talking about plans that don't have a set time, place, or other details. Many autistics will find vague plans stressful, as they don't have the chance to mentally prepare. Suppose details haven't been confirmed on the day of. In that case, autistics can end up in a kind of limbo, unable to do anything else because they haven't had the chance to make a schedule. This could cause anxiety because it can mean a lot of wasted time that could have been spent more productively if the plan had been clearer.
Vague plans are also something neurotypicals often use as an easy way to back out of doing things. For an autistic, this still counts as a change of plan, even though the specifics hadn't been set. We may be unable to just go about our usual day and still be ready to go whenever the other person is.
To give you an idea of what a comfortable plan might look like for an autistic, these are the details I usually want: date, time, location, transport, menu (if we are going to eat somewhere new), the expected noise level of the location, and who else will be there.
Note that spontaneity is different from vague plans. Some autistics may appreciate being invited to spontaneous events, provided no one will be upset if they say no.
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Many autistics are vulnerable to abuse, particularly of a mental or emotional nature. Bullying is a shared experience, for starters. Autistics often don't fit in with their peers and are unaware of social rules or expectations. They may have different communication styles or ways of moving, leading to misunderstandings and being perceived as "weird," gullible, and easy targets for bullying. In reality, it's not being gullible but taking things literally or seriously and trusting that others aren't lying to us due to our honesty. Beyond bullying, autistics often face the world trying to force them to be or act like everyone else. This can be unintentionally abusive, such as being forced to tolerate distressing sensory input. Abuse can also include:
Being punished for meltdowns or shutdowns
Being punished for treating people as equals instead of understanding the hierarchy
Being punished for misunderstandings or miscommunications without an explanation of what was wrong
Being punished for being themselves
Being gaslit and manipulated
Being excluded due to differences
Being made fun of for taking things literally and seriously
Not being allowed time, space, and accommodations to thrive
Masking to make others comfortable
Being denied emotional support
Causing us to believe that everything is our fault
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Some autistics may have difficulty understanding concepts of authority or hierarchy. Here are some of my experiences with why this is. I want to add that while this tendency can cause trouble and be inconvenient, it can also be beneficial. From my experience, my brain views every person as equal, regardless of status, age, authority level, race, culture, position, etc. The only exception is their level of education. If a person is more educated on a topic, I'm likely to place more value on their opinion. However, qualification does not equal education in my brain. People can have qualifications and still seem clueless, and people can be without qualifications but still be well-educated on a topic. Hierarchy doesn't make sense to my brain, and this has caused issues for me. Parents, teachers, elders, bosses, and managers expect more value to be given to their words. They often expect not to be challenged, called out, or put on the same level as those they view as "below them". Because I see everyone equally, I don't care what position you are in - I will treat you as an equal. I will love, challenge, and value your voice just as much as any other person. Why? Because we are all human, we are all equal.
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Sometimes, people on the autism spectrum take words literally. This means that metaphors and common sayings may confuse us, and our responses may confuse others. For example, when we interpret things literally, other people can think we are being rude, sarcastic or sassy, or talking back. Sometimes we can get into trouble for it and have yet to learn why.
For example, people on the autism spectrum may wonder why people say, "What's up?" or "Grab a seat," while everyone else knows what they mean. Similarly, phrases like "the elephant in the room" or "marriage is not a word; it's a sentence" may be confusing.
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Empathy is the ability to understand and share another person's feelings. There is a wide range of experiences with empathy among autistics, and it is not accurate to say that all autistics lack empathy. It is the capacity to sit with them and relate to their feelings in that space. Not having this does not necessarily mean a lack of care. For example, some autistics, like me, have difficulty understanding or relating to emotions or experiences they have not experienced. I cannot pretend to understand, or try to put myself in someone's shoes and feel what they are feeling, because I haven't lived it myself. However, even if I may not be able to "feel it", if I care deeply for that person, I will do my best to do and be what they need at the time. Hyper-empathy: Some autistics are incredibly empathetic. They feel things more deeply than most. However, they may not know how to express that. They may even have difficulty distinguishing between their own feelings and those they feel on behalf of another person.
Sometimes, what they feel can be so intense that it causes them to shut down, which can be seen as a lack of empathy. Expressing empathy: Many autistics show empathy or understanding by sharing a story of a similar situation that they have experienced. They use their story to provide proof and explain how they understand what the person is feeling. They use it to express the fact that the person isn't alone. Unfortunately, neurotypicals often view this as an attempt to steal the attention, when it is not. Instead, it is to say, "I know what you're going through and this is how I know. This is why I understand, and I'm here for you."
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Many autistics don't experience emotion in the same way as neurotypical people. We may feel an emotion without expressing it or represents an emotion in the form of another. For example, feeling happy may look like being overwhelmed. We may convey an entirely different emotion than what we are feeling.
The difference between these scenarios is that, in one, the behaviour is how we express emotion. On the other, the behaviour is not connected to our inner feelings. It could be a defence mechanism if we feel unsafe showing a particular emotion. Alternatively, we may have no idea how we are feeling.
Because this is often our experience with emotion, we may not read other people's feelings correctly. So, for example, if someone is crying but tells us that they are okay, we might trust their words more than their actions and then continue as if that person were okay. Some autistics are also hyperaware of how other people feel, like how some animals can sense something wrong.
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Eye contact is a big issue for ME, but it’s generally either too little or too much of it for other people’s liking. I first noticed that this bothered me pretty late in life, but when I did, it was my first insight into what interoception even is - I genuinely could not tell why I felt this uncomfortable, so I would do it anyway and then cringe and think I was being cute and socially awkward. I mean, I’m still cute, but whatever. Don’t force people to make eye contact with you. It’s a stupid social norm, and people attribute all sorts of meaning to you not being able to do it - don’t be hard on yourself if it causes you stress. I love u.
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Most autistics have difficulty fitting in. They may feel like they don't belong anywhere or are on the wrong planet. They may even feel disconnected from their family due to their differences. This can lead to a lack of feeling of "home". Knowing that you're autistic is important for this reason. Belonging is a key factor in a person's sense of well-being. Knowing that you're autistic explains a lot and helps you find people you can relate to. It also means that statements like "I don't belong here" or "I've never fitted in" can be our reality. Some autistics genuinely don't experience a sense of fitting in or belonging. This can be a warning sign of mental distress, but it can also simply express our daily experience.
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For many autistics, even a single unexpected change in a day can cause a chain reaction of events that no longer go according to plan. Routines and plans are often built on one another, so if something is cancelled after the day has already started, it can be very stressful.
For some autistics, that window of time to adjust to a change is much larger. For example, if I know about a change the day before, I can usually make a new plan. However, if too many things change in a week, I may not be able to cope.
Changes can also disrupt routines. For example, suppose one aspect of a routine is changed or can't be completed. In that case, an autistic person may have difficulty doing the routine at all. This includes small details like object placement, food, the people we see, etc.
I think a large part of why change can cause so much anxiety for autistics is because we need more mental preparation than most people. If we aren't given enough time to prepare, we won't have the tools or capacity to deal with it, or our needs won’t be met.
I am an extrovert, so I need a certain amount of time around people, but I'm also autistic with sensory processing disorder. So if I know I have social time coming up, I will need to take time in my day to be alone, without stimulation. However, if the person then cancels the social event, I've now spent the day done, not getting the social time I need. Or, if I am relying on someone to help me with groceries or a chore and they cancel, I won’t have time to prepare my brain to do those tasks alone, and then I may not be able to do them at all.
The world’s generally confusing and difficult to navigate, so it’s nice if some parts of our lives are predictable and familiar.
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Answering a future-predicting question can be really stressful for some autistics, as things might be different when the situation happens. To help, it can be useful to phrase questions in a specific way and more about the present moment. For example:
"Do you feel comfortable with these options if things go badly? Do we need to come up with some more?"
"Do you need any help with this task today? You can let me know if things change."
"Do you intend to try to stay safe?"
"Do you feel able to look after yourself today?"
"Do you know what you can do or who you can contact if you need help? Do you intend on trying to use those options if you need them?"
The main difference in how these questions are worded is that they're about how the autistic person feels in the moment and about trying rather than guaranteeing. Intent isn’t definite; it is, in that moment, what one is aiming for or wants to do, but it doesn't promise that it will happen that way. This approach may not be helpful for everyone. It's just what worked for me. Some autistics may still find that they are unable to give answers about their intentions because they won't know until the future becomes the present.
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Research suggests that autistics are more likely than the general population to identify as part of the LGBTQ+ community. However, I want to focus specifically on gender, rather than sexuality. The majority of things used to define and relate to gender are actually just social expectations, and have nothing to do with biology, practicality, or logic. Autistics often don't pick up on or follow societal expectations and social rules, which could make it difficult for them to fit into a definition of gender. This isn't necessarily the reason why autistics may identify with a gender different to the one assigned at birth, but it could be a factor. Gender is a social construct. It doesn't make sense that one's genitalia should determine anything about their appearance or their interests. If people aren’t aware of social rules and expectations, they are more likely to be who they want to be, without regard for what others think. This could lead to them realizing that they don’t fit into what society expects of them as their assigned gender, and coming out as the identity that fits who they are. Changing the label changes the expectations while also expressing who they are.
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I want to preface this by saying that many autistics can work in a group, but it can be stressful, frustrating, and far from ideal in certain situations. Here are some things that can make group work difficult for an autistic:
Having to rely on someone else's timetable
Taking the work more seriously than others
Difficulty with socializing/communicating
Others slowing them down
Higher chance that the end result won't be their desired outcome
Others not understanding their schedule
Slower conversation-processing speed
Difficulty adapting to changes in plan
Difficulty adapting to someone else doing something different than expected
Difficulty with compromise
Others not understanding sensory difficulties
Feeling that their grade should not depend on others' work
Others not following a structure
People going off-topic or being distracting
Some autistics may try to manage these things by attempting to lead or direct the group.
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Many autistics are known to laugh at inappropriate times because we are either unaware of social expectations or because our sense of humour is distinct from most people's. For example, I once laughed loudly during a movie scene in which everyone else was crying in Canadian history class. It was a war scene where the protagonist died, and I thought it was a joke because it was so unrealistic, and I could not understand why others were so upset. Autistics are less likely to find things funny if they don't make logical sense. They might hear a joke and immediately explain why it is incorrect without realizing it is a joke.
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It is common for neurotypical conversations to have multiple topics and to flow into subject changes. Everyone seems to keep up with the conversation topic and when it changes. For some autistics, this can be really difficult. To us, it's like neurotypicals have multiple chat boxes open. They can separate the topics, see when they merge, and know when one has been closed.
In contrast, some autistics have only one chat box for the entire conversation. It can then be difficult to figure out how everything that is said fits together - especially when it doesn't. Conversation between multiple autistic individuals can look quite different. They may discuss only one topic at a time, moving on only when that subject is finished. This can lead to pauses in the conversation, which many of us are okay with. Sometimes one person might be reminded of something during a conversation, and then proceed to change the subject, but they don't often discuss the previous topic simultaneously.
Please note that not all autistics have the same experience, and ADHD may also affect how conversation on multiple topics goes. If you're interested in all the topics, you can jump between them. It depends on who you're speaking to, what you're speaking about, and whether you care.
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Although many autistics need time alone, this does not mean they don't want friends or social time. Loneliness is a common issue among the autistic community. It is deeply unfulfilling to be misunderstood by most people, and being in a loving community is a primal need for us all.
SPECIAL INTERESTS
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Info dumping is our tendency to talk about an exciting topic, usually somehow related to our special interests, regardless of context or social cues. And we may not know when to stop.
For some of us, it's like someone has pressed play on an audio file. Still, the pause button is tiny and well-hidden, so all the information comes out whether people are interested in hearing it.
Sometimes people need to be educated, and we are merely doing them the favour of giving them access to correct information. I say this somewhat jokingly but also dead seriously at the same time.
We get excited when people genuinely engage in our interests and want to listen to us spew facts about random things. It's part of how we socialize.
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Someday, I’ll tell you how my strong sense of justice made me quit or get fired from every job in my early 20s because I was on an anti-capitalist warpath. Anyways … many autistics have a strong sense of justice. They may feel an intense need to take action to right any wrongs they perceive, even if it means disregarding any potential consequences. This need is often independent of whether or not the situation directly affects them. This can create tension when it comes to authority and hierarchy. People who feel they should be respected may interpret an autistic's sense of justice as disrespect or an attempt to put them below others. They may then punish the autistic person for trying to make things right. This is especially common among family members, who may feel they shouldn't be "called out" and that the autistic person values them less than whatever is being defended. It's important to remember that this isn't usually about the person being called out. It's about the injustice. The person's involvement is a consequence that has been overridden by one of the autistic's core values. Autistics often view all people equally. No one is of lesser or greater value, and this view may extend to family or blood relations. This is less accepted and understood in broader society, where family is often considered more important than others, and different social rules apply to them.
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Many autistics have special interests. We are particularly passionate about these things, to the point where it may come across as an obsession - we may gather and store excessive amounts of information on the topic, which could be anything. For example, my special interest is autism/ADHD. I can be absorbed for hours on end, learning things about neurodiversity through readings, personal essays, data, and lectures, and I can retain most facts very well.
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I have an obsessive interest in music: particularly lyrical interpretation, singing and playing folk instruments, but also delving into all different cultures, musicals, and music-adjacent projects. My favourite song is Lover, You Should’ve Come Over by Jeff Buckley.
Anyone who knows me also knows my lifelong special interest in dogs. On impulse from a strange lady on the internet, I bought my dog without anyone's permission to come live with my family and me. I had no right to do that but it felt like a calling. It's okay, though; our family now spoils her rotten. You can check out her cute little outfits - I run an instagram (@laceythepugzu) for my queen and bestie, and I can never shut up about her.
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Skincare – the thing about “special interests” with autism is that – sometimes I will have a 10-step skincare routine during my hyperfixation period, and other times I will forget to wash my face.
Being introduced to new forms of learning or consuming content – it was podcasts a few months ago, and I would not shut up about them to my cousin, and now it is audiobooks – 30 books loaned on Libby and another 150 on a wishlist.
Bob’s Burgers - I am hyperfixated on having gentle parents and a less dysfunctional family. #yearning
CO-MORBID/
MISDIAGNOSED
MENTAL HEALTH CONDITIONS
You might also have these. With a late diagnosis, there's a high likelihood that you persevered through multiple things. This is the worst feeling, and it might bring up some grief. Hang in there!
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See our ADHD page.
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duh. it’s anxiety-inducing trying to exist without self-awareness in a world that will strip you of any sense of self you ever had.
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Sorry! It’s one of the many pitfalls of a late diagnosis - your brain gets rocked and your trauma gets shaken loose a little. EMDR therapy is great. Parts work is also a good place to start. I’ll link some resources. I love u.
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It’s depressing not to know you have autism. You end up dissociating, trying to be neurotypical, and just ending up feeling like a poser who you don’t even respect.
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Dissociative disorders involve experiencing a disconnection between your body and your mind, where you have no control - like being in the passenger seat, except the car is your body. It can also impact your memory, make you feel disorientated, and affect your perception of time. It also involves a lack of continuity between thoughts, surroundings, actions and identity. This way of escaping reality is involuntary, unhealthy, and causes problems with functioning in everyday life. It might be connected with overstimulation and may result in a shutdown.
Dissociative disorders usually develop as a reaction to trauma and help keep difficult memories at bay. Symptoms — ranging from amnesia to alternate identities — depend partly on the type of dissociative disorder you have. Times of stress can temporarily worsen symptoms, making them more obvious.
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Executive dysfunction is wanting to carry out a task but just not being able to. It is common for autistics to struggle with executive functioning, especially if they also have ADHD. It impacts our ability to plan, start and stay on task, stay organized, motivated, regulated, and adjust actions according to the situation.
In a sense, what might seem like just one task for one person might become several difficult tasks for someone who struggles with executive functioning. For example, making a cup of coffee (one task) might become: "I went to make coffee. That requires getting a mug out of the cupboard, coffee out of the pantry, milk from the fridge, and a spoon from the drawer. Then I have to boil the kettle. But the kettle is empty, so I need to fill it first. But the sink is full of dirty dishes, so I need to do the dishes. That requires taking the dishes out of the sink to fill it up with soapy water. Are there dishes anywhere else around the house? I need to clean my room," ... and so on. By the end, so much information and stuff needs to be done that the original task feels overwhelming and paralyzing.
Even if the autistic person manages to start the task, information may still be coming through faster than they can handle. An individual who struggles with executive dysfunction may start each new task as it comes to mind while simultaneously forgetting about the original task. This could become dangerous if the initial task was cooking or ironing. Another form of executive dysfunction is when the person is aware of their tasks but unable to prioritize them correctly. All tasks and steps are given equal priority, making it hard to start anything. Steps may be approached out of order - for example, pouring a drink before getting a cup out. Or the person may be unable to switch from the task they are currently focused on, even if something more urgent arises.
TIPS:
Make a plan for the day or week.
Create a checklist of tasks to complete.
Have step-by-step, visual instructions for tasks that need to be done regularly, and stick to a routine or schedule to complete them.
Download an app that gives reminders about tasks.
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Obsessive-compulsive disorder is a chronic, and long-lasting disorder in which a person has uncontrollable, reoccurring thoughts ("obsessions") and/or behaviours ("compulsions") that he or she feels the urge to repeat over and over. A person with OCD generally can't control his or her thoughts or behaviours, even when those thoughts or behaviours are recognized as excessive. These symptoms can interfere with all aspects of life, such as work, school, and personal relationships.
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Motor tics are sudden, brief, repetitive movements, such as eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking. Common vocal tics include repetitive throat-clearing, sniffing, or grunting sounds.
Okay … oh no.
Now what?
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Once you realize that you have been masking, you may also realize that you are unsure what it looks like to stop. If you've been doing it for most of your life, it can be hard to figure out what's you and what's masking. It can be not easy to turn off the constant thoughts that you've only just realized aren't a universal experience. Yes, people socialize without thinking about every detail of what they are doing … crazy, right?
Navigating how to explain these concepts to different people in your life, and dealing with their reactions, can also be difficult. They may take time to relearn what different things mean when communicating with you. For example, a lack of eye contact doesn't imply a lack of interest. Unmasking can take trial and error while you figure out what is the most comfortable and least draining way for you. However, for many autistics, masking is exhausting and can hurt overall well-being. So unmasking and being yourself is important.
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This is a common conversation among late-diagnosed autistics. Once you’re diagnosed in your late teens or early adulthood, you might start feeling like you are becoming "more autistic" and, in turn, feel like you’re faking it.
If this is you, you aren't faking it. Most people get to spend those years figuring out who they are, changing daily, trying new things, making mistakes, etc. But you didn't get to do that because you didn't know about this huge part of who you are. You probably knew you were different somehow - maybe you felt like you just hadn't found your place yet. Maybe you just needed to work harder to fit in.
You didn't get to spend that time figuring out who you truly are. Now you have the information, and you are playing catch up. You’re trying less to be something you’re not, subconsciously or consciously. You are not becoming "more autistic"- you are doing the things that make you who you are and make life a little more manageable.
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This topic concerns the importance of getting an autism diagnosis early and being aware of one's autism from a young age. For the well-being of an autistic individual, they must know about their autism from a young age. Avoiding this awareness does not protect anyone.
Imagine this: you are blind but don't know it, and neither do most people. You know you are different, but don't know why. You have difficulty with tasks that others find easy, and no one understands why you can't keep up. You feel like a failure, not knowing that everyone else has an advantage that you don't.
Furthermore, since people don't know you are blind, you don't get access to tools to make things more manageable and fair. You spend excessive energy trying to appear like you are not struggling, and like you are the same as everyone else. You don't learn how to do life in a way that works for you, because you are trying to do it like everyone else. This drains you and makes you feel inadequate.
If you had known you were blind, you could have had the right tools, support, and information. You could have found others who understand your experience, don't look down on you, and aren't trying to "fix" you.
Now imagine this: instead of blindness, it affects your thought patterns, movements, ability to manage stress, social skills, and the entire way your brain works. Autistics know they are different, even if they don't know about their autism. They know they are struggling and becoming increasingly tired, but without knowing they are autistic, they don't realize their peers aren't having the same experience. Eventually, they will burn out, because they can only keep trying and being pitted against neurotypical peers without the same advantages for so long.
At age 27, I was diagnosed with autism. Knowing sooner could have prevented or reduced the seven years of severe mental illness and safety concerns I experienced. I felt isolated and out of place. After my diagnosis, I found places where I felt a sense of belonging and people who understood me. I also gained access to supports and information that helped me manage life. It's been healing to know. I spend lots of time talking to my inner child and comforting her - she was terrified. It's nice to tell her now that we are safe.
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I want to remind everyone that autism cannot be cured. Here are my thoughts on working towards a "cure."
Autism is a neurodevelopmental condition that affects how our body and brain develop, how we perceive and understand the world, and shapes who we are. To cure a person's autism would be to completely change who they are. Furthermore, the autistic person has spent their life developing and perceiving the world in one way. If that suddenly changed, it would be extremely confusing and traumatic. It would affect all of their memories up until that point, and they would have to relearn their entire understanding of life.
Rather than trying to cure autism, we should focus on understanding and accepting it. Many autistic traits are not harmful and do not need to be fixed. Some of these traits help the individual to regulate. Taking these tools away can be detrimental to their wellbeing in the long run.
If we look to cure autism by preventing the birth of autistic individuals, then we start getting into eugenics and discrimination. Life has difficulties for autistics, mostly because the world isn't educated about autism or understanding and accommodating of it. Raising a child with a different neurotype brings challenges but can come with unexpected struggles. As an autistic individual, I find it easier to connect with and look after autistic children, but that doesn't mean I would want to avoid having a neurotypical child.
Looking at all these points, I can't think of any good reason to try to rid the world of autism. As someone diagnosed late, I spent twenty-seven years suppressing my autistic traits to fit in, resulting in several years of burnout and suicidality. I prefer my life now, where I can be the authentic, autistic version of myself. Nothing would make me want to cure my traits, because in a way I've already been there (or as close as one can get to it) and it put my life at risk. This knowledge is power - it brings you home to yourself.
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When I refer to "functioning labels," I'm referring to the terms "high-functioning" and "low-functioning." Many people in the autistic community view these terms as ableist, invalidating, and not an accurate reflection of anything other than how well we "pass" in the neurotypical structure.
When someone says an autistic person is "high-functioning," they are usually trying to express how "normal" an autistic person appears. It doesn't reflect their needs, support requirements, or differences. It's often phrased as, "Oh, you're autistic? But you're high-functioning." This label disregards all of their experiences and differences as an autistic individual.
Autistics can get labeled high-functioning regardless of whether or not they need support in certain areas. This label can then prevent them from getting the support they need. Saying someone is high-functioning is essentially saying "You can, at the very least, look like you are functioning in a neurotypical world. That makes others more comfortable, and you are expected to keep doing that even if it forces you into burnout. Therefore, we are not likely to provide as much support or accommodation because you can mask to fit into our world."
On the other hand, "low-functioning" is used very negatively. I've mostly seen it used to express how difficult it makes life for those who support the individual. It isn't reflective of the person's strengths or what their support needs actually are. It refers to those unable to pass or function in a neurotypical structure.
Autism and its needs can vary significantly from one person to another. Therefore, it doesn't make sense to have only two labels that express how autism affects people; they shouldn't be about how well they can hide their autism.
Fortunately, functioning labels are being done away with. Instead, we should be talking about what support needs the person has, the accommodations they require, and the strengths and differences associated with being autistic.
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Engaging with the mental-health system as an autistic individual can be challenging. Professionals in the mental health system often lack understanding or education about autism, making it challenging to provide helpful treatment. Some autistic traits, such as hiding, not speaking, avoiding eye contact, stimming, having meltdowns or shutdowns, executive dysfunction, and poor interception (which can look like poor appetite), can be mistaken for mental distress by those who are not educated or aware.
The second issue is that mental health professionals are used to treating an illness or disorder to reduce symptoms. However, autism and the struggles that come with it can sometimes be the underlying cause of symptoms of mental distress. Autism affects our thought patterns and ability to manage stress, but it cannot be changed, eliminated, or have its impact reduced. Instead, we must identify what is causing the distress, learn different coping mechanisms, and adjust our environment to be more suitable.
We may still need support to deal with distress in the moment and to improve and manage our mental health. But a different approach is necessary, as the mental health system cannot "fix" autism.
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Okay, so I’ll level with you. If you’ve read through all of this, you’re like autistic. You’re gonna go through the seven stages of grief. You’re gonna re-evaluate your whole life and doubt everything you’ve ever said and done. Your brain is gonna be in overload, and you’re gonna wanna sleep all the time. Allow yourself to rest. This is huge stuff, and it’s hard, and it takes time to process. Know that we’ve been there, and we have felt your pain and your sense of loss and your anger. We’re here if you want to talk, and we check our email - write us. Ask questions. Join communities that represent you (join us if you like!) and find your people. It really helps to meet like-minded people and remember that your world has not gotten any smaller - you’ve just opened up the world inside of you, and it’s a time for exploration and fun and forgiveness and healing and beauty. You’ll learn how to live for yourself and meet your own needs. You’ll remember moments of genuine connection to your authentic self, and you’ll find the parts of yourself you thought you lost because they were weird. Take care of yourself, do things that make you happy, and remember that you’re never as alone as you’ve felt. I see you and I love you!!!